THIS month, Bermuda celebrated the opening of its first centre devoted to the care of young persons with autism. Called Tomorrow's Voices, it is the culmination of years of effort by a group of parents and friends involved with the Bermuda Autism Support and Education Society (BASE). Past president of that organisation, Tricia Crow, met with Mid-Ocean News reporter Heather Wood and photographer Tamell Simons to explain why the establishment of Tomorrow's Voices was so critical to our community.

Q: How did you become involved with autism?

A: I moved to Bermuda in June of '98 with my three sons - one-and-a-half-year-old twins and a two and a half year old. We had had concerns about the oldest since he was about 14 months. He wasn't talking and he had lots of tantrums. Once we moved here our concerns were still prevalent. He was enrolled in nursery school where they said he didn't seem to be having fun because he wasn't playing with the other kids. What we eventually found was that he was having fun, he just liked to be on his own.

Q: How was he diagnosed?

A: We took all of them to see Yvonne West at the Department of Health. The twins were then two and not speaking. She saw Geoffrey, who at that time was age three, and she said, 'I think he had PDD'.

Q: What's PDD?

A: Pervasive Developmental Disorder, which is a part of the autism spectrum.

Q: And then what happened?

A: We started the fight to get him diagnosed. In July of '99 he was diagnosed with high functioning autism. Kids have to fight now to get help here on the island and in '99, there was nothing at all. I eventually got involved with (a now defunct) autism group and met (current BASE president) Thea Furbert and Debbie Larcher (whose) sons were diagnosed at the same time. We met at a support group meeting where they told me, 'Nope, there's nothing here, the support group is it'.

Q: I take it you didn't accept that?

A: We said it wasn't good enough and began looking at establishing a support group which would provide information to families. And we figured that if we gave helping services that same information, that the help we needed would arrive.

Q: Bermuda Autism Support and Education Society (BASE) came out of that?

A: That's how BASE was formed. To date, we've held 37 seminars, workshops and hands-on training (events). In February of 2001 we got charity status.

Q: How many people have autism on the island?

A: One in every 150 people has autism worldwide. Bermuda has at least that, if it's not higher. I can't give exact numbers because there are no statistics in Bermuda. They're difficult to get. Part of it is because you can't get diagnosed here. You need a team of five specialists to get a diagnosis and it takes place over a period of two or three days.

Q: And once you'd established BASE?

A: Even with the group, we found that no matter how much we educated and informed, the support was not happening. Families still had to work two and three jobs to hire people from overseas to come and work with their kids. We were told we needed between 20 and 30 hours of intensive, one-on-on treatment. They don't learn in the same way as people without autism. A child with autism has to be taught everything - how to say a word, what it means and all its different uses. A table, for example, has many different functions and they have to be taught them all.

Q: Where did you go from there?

A: It became the aim of the group to find treatments for parents that best suited their child. There are so many out there because autism is so huge and so encompassing but what we found was that one, Applied Behavioural Analysis, tends to get the best results but each treatment has to be individualised. We have to consider, for example, socialisation versus language skills. And what we found is that ABA tends to be the best and then it is individualised to each child.

Q: You mentioned about hiring people from overseas to provide assistance to kids. How expensive is that?

A: I know of families on the island who are spending between $50,000 and $60,000 a year hiring people to help their kids. And it's all out of pocket. There's no assistance and we see it with all these families. In the case of my family, we had three kids with autism.

Q: And for the average family that can't manage such a huge sum?

A: Some families can't afford it and their kids go into mainstream (education) and are pushed through the system even if they're functioning at the level of a two year old. They're not getting an education or the treatment they need.

Q: And it's that financial need that drove you to establish a centre?

A: Thea and myself had been talking for years about how Bermuda needs a centre where people can take their kids because it's what they need.

We had hoped that schools would add on autism classrooms for intensive treatment but we were told there was not enough room, that there was not enough space. Our boys are in (traditional) school but then come home for intensive therapy.

Q: Aside from the need for therapy, are there any special considerations with regard to education?

A: We want our kids to be successful. If they fail, it's unlikely that they will try again. And, they have to feel good when they're doing it. All of that needs to be considered.

Q: How active is BASE? How great is the demand for its services?

A: Every year we have two or three new families calling. We can give them information and training, but we really need to hire someone who's trained to help - and most likely they will have to come from overseas.

Q: When did you decide to move forward with the idea for Tomorrow's Voices?

A: Last year we said, "This is it. We need a centre." Thea's sister, (executive director of the Duke of Edinburgh's Award) Erica Smith, Thea and myself spoke with people involved with representatives from (centres) from abroad. We took the best of what they had and changed it to better suit Bermuda's needs, came up with a business plan and decided, in 2007, that we would have an early intervention centre to treat kids with autism.

Q: It was that simple?

A: Not really. We took our proposal to Government and the private sector - anyone who would listen - to try and get it going. We were looking at well over $500,000 and we wanted to provide our services at little, to no cost. We want them to have somewhere to turn, somewhere that is affordable, to help children get what they need because with early intervention, the prognosis is amazing.

Q: How critical is early intervention?

A: This is a neurological disease they will have for the rest of their lives. It's not deadly, it won't shorten their lifespan but if they're not given what they need early on, they will have to have full-time care for the rest of their lives.

But with early treatment, it can reduce the cost of the care they need from $3 billion to $300,000. We have kids who have grown up to become productive adults but, with no treatment, kids typically become institutionalised adults. And this is where Tomorrow's Voices came from. We're working with kids today, to give them voices tomorrow. Most kids with autism don't acquire language skills. They remain mute. My eldest child's first words were 'Big Bird' - at the age of three and three quarters - because of the carpet at his nursery school. I didn't hear him call me 'mummy' until after he was four. A lot of parents don't realise it, but your child calling you 'mummy' at 15 months is a big deal.

Q: How did you realise your dream?

A: We did a business plan and we got funding through the private sector and Government. Community and Cultural Affairs Minister Wayne Perinchief was the first to look at our plans and say, 'You need this'. Two or three weeks after meeting with us he said we would get our funding, and (the Department of) Education followed. (Acting permanent secretary for Community and Cultural Affairs), Myra Virgil has taken us on and said she will help and try and coordinate. Everyone has been supportive.

Q: What kind of assistance do you offer families?

A: This year we're doing small, baby steps. We have four therapists and a director offering mainly one on one (treatment), we expect our highest ratio will be one to two. At the moment we have four kids enrolled and we are accepting (requests) for a fifth.

Q: And you accepted those children based on their degree of need?

A: The level of the children we are seeing now - they are very early learners. I should explain that 'early' means the stage they're at in their learning. And ours are early or early intermediate.

Q: I understand the staff members received special training from an industry specialist. Who was that*?>*

A: Our staff members were sent for two week's training with Dr. Vincent Carbone, a verbal/behaviour guru who had been here for a seminar. He looks at the acquisition of language and can deal with all sorts of behavioural (matters). And we sent him videos of the children enrolled and he was able to offer specific advice for each one of them.

Q: Where is Tomorrow's Voices located?

A: 155 South Road. In the old Talbot School, what is now Marsden Church Hall. We have classes between 8.30 a.m. and 5.30 p.m. and therapy between 9 a.m. and 4 p.m.

Q: How do you feel now that it's all coming together?

A: For me it's something that we as parents, as BASE executives and people, have been trying to do for a while, to get awareness. Bermuda can be a landmark area. If this tiny island can have a centre then it can (serve as a model) for Caribbean nations - they can do it too. No family should be stuck with a diagnosis of autism and have nowhere to turn to. My children are now advanced learners, or close to it. They're at the very end of learning. They will always need more teaching but hopefully, they will have been provided with the necessary skills and coping techniques. What this means for me, it means we're finally getting something for these kids. As a mom who's gone through it, basically alone, it means no other will have to do what I did. The diagnosis can paralyse you. It can be really scary. But it's not a death sentence. Our plan is that the centre will grow, it will morph as we expand. Next year, we hope to have ten students, the year after that, 15. In year three, we hope to offer behavioural services, socialisation courses and see outpatients, people who only need an hour or so of therapy. Our plan is to work closely with Government (as) kids need to be mainstreamed into schools once they have coping skills.

Q: How much potential for growth is there*?>* Any evidence?

A: Bill Gates is widely believed to be autistic. He made Microsoft. He's a billionaire. Jackie Barrett, who just came down to speak on the island, is a four-time gold medal winner - a power lifter in the Special Olympics - and he has a business degree from a university. Temple Grandin is a professor in Colorado. She designs cattle ranches and abattoirs so the animals experience the least amount of stress and she openly admits she's autistic. So the potential is endless. (Third president of the United States) Thomas Jefferson was most likely autistic. So was (composer Wolfgang Amadeus) Mozart. We'll never say people with autism can't learn or can't do anything.

Q: What ages do you cater to?

A: Anyone between the ages of two and 21 - because we had to put a cap on it. But hopefully we'll be able to expand. We want to offer training to MAWI (the Mid-Atlantic Wellness Institute), to schools and to parents.

Q: What do the kids do during their free time at the school?

A: Ultimately, they all like music, they like jumping. We find ways to motivate them and ways to engage them. Autism is an enigma. These kids have such humour, such personality. They're just stuck behind a barrier and fortunately we see (their characteristics) emerging everyday.

Q: What are some common misconceptions about autism?

A: Years ago, one was that kids became autistic because their mothers were refrigerators, because they weren't "cuddlers". That's not true. It's most likely a genetic disorder and people need to know, no matter what, that these kids can learn. If they're not learning it's because we're not teaching them properly. No matter what their age, no matter what their level, not matter what their ability, they all can learn. The potential is different, but they all can learn.

One thing I'd like to point out is if you see a child having a tantrum, don't be critical, it could be that the child isn't bad or rude. The problem might not be that the mother can't handle them. Don't judge. It could be something more. It could be that that's the only way the child knows how to express themselves - especially when you're young and fresh to autism. And for new parents, maybe the child hasn't even been diagnosed. It's tough.

And so we really want that education out to the community. We need to help and educate rather than criticise and segregate these kids.

Q: Going through all of this with three kids must have been difficult. What did you do to de-stress?

A: For me, for the last seven years, my entire life has revolved around autism. I had volleyball and softball and I had support from Thea and Debbie and my friends. Sometimes I would just want to go out and dance. But seeing a child improve really helps things. The group we formed, BASE, what we do, and what we want to do is to empower parents.

Q: Any signs parents should look out for which might signal their child has autism?

A: If they're not making eye contact, if they don't play with other kids, if they have lots of tantrums, if they have language problems - all these are red flags. Seek help. If they're not autistic, it's great but the earlier they're diagnosed the better.

Q: Any requests for 2008?

A: We do need more funds for the next year if anyone can help us in any way. Ultimately (Tomorrow's Voices) is for the kids and for Bermuda and we want it be here forever. Seven years ago, 1 in 10,000 children were diagnosed with autism, now it's 1 in 150. It's a growing problem and these kids are our future.

For more information on Tomorrow's Voices, BASE or autism, contact Ms Crow on 535-7277, Ms Furbert on 236-8307 or the centre directly, 297-4343.